What Shall We Call It? No Evidence of Disease Rather Than Cure?

What Shall We Call It? No Evidence of Disease Rather Than Cure?

Anne Katz, PhD, RN, FAAN

@DrAnneKatz
Dec 03, 2019

I see men for their survivorship transition visit after completing radiation therapy for prostate cancer. I have written about this before; I find these appointments enjoyable and usually less challenging as they do not require complex discussions. Some of these men are coming in 6 or more months after the completion of radiation. Others are years down the road and have been attending appointments annually and are finally being discharged to the care of their primary care provider.

About half the time the man will ask me, “So Doc, does this mean I’m cured?” This is where I take a deep breath and hope that I am going to have enough time to complete this discussion before the next patient who is no doubt waiting patiently (or not) in the clinic waiting room.

I try my hardest to avoid a discussion about cancer-specific survival, disease-free survival, or overall survival. These are complex terms for the lay person to understand and this is really not what the patient is asking about. He wants to know if he’s cured. Occasionally a man will ask if he’s in remission, but for the most part, the ‘C’ word is what he is looking for. I don’t use the word cure; I have had patients as well as friends experience a recurrence many years past the 5-year date and then rapid progression, ultimately dying of their original disease. Most of them thought of themselves as cured until the recurrence.

I wrote a book with a woman named Liz and the memory of my friend’s devastation when diagnosed with metastatic disease almost 5 years after her initial treatment reminded me of how ephemeral cure really is. Liz was a nurse and she was living her life fully as an executive with an international oncology nursing association, the center of her family, and with a busy social life. I had met her some time before the recurrence and didn’t know her cancer history. She was Liz—funny, engaging, supportive of her colleagues, and creative in her approach to her work. When she told me that the cancer was back I was saddened but not shocked. Cancer comes back, we all know that.

So when my patients ask me if they are cured I explain to them that cure means that there are no traces of cancer in the person’s body and the cancer will never come back. I tell them that we cannot say that for sure, not ever. For me or anyone else to tell them that they are cured is, in reality, not possible because we don’t know if there are any cancer cells lying dormant somewhere in their body. Cure suggests a guarantee and there are no guarantees with cancer. That can be hard to take for someone who wants to be told that they are free and clear, even though they may have some other condition that poses a greater risk to life and limb. They want to know that the cancer is gone, because in their mind, this ‘C’ word is the worst thing in the world. And perhaps what they also want is an end to monitoring of their disease, the blood tests that raise anxiety every six or twelve months.

Some men ask me if their prostate cancer is in remission. This is another term that can be difficult to explain. Remission, according to the National Cancer Institute, means that the signs and symptoms of the cancer are “reduced.” But what does reduced mean? When a patient is looking for cure, anything else, especially if vague, is not enough. I tell them that at the present time, there is no evidence of disease in their body. I explain that for prostate cancer, “no evidence of disease” means that their PSA level suggests that their cancer is not active but that they still need monitoring.  I go on to encourage them to continue with PSA surveillance and also to trust that their primary care provider is quite capable of this. I provide the soon-to-be ex-patient with a copy of the letter sent to their primary care provider that states clearly that PSA monitoring should continue at 3- or 6-month intervals and that the man should be referred back to us if a certain threshold of PSA is detected.

No evidence of disease, in my opinion, leaves room for the doubt that many patients face after active treatment is over, and doubt in the form of fear of recurrence is ubiquitous. But it also leaves room for hope that is also part of the cancer experience, for those who have experienced cancer as a patient, a loving family member or friend, and of course for those of us who provided care to that person over months and years. We want no evidence of disease to be the ongoing trajectory of their life, encompassing cancer-specific survival, disease-free survival, or overall survival.

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Comments

Brenda Denzler

Dec, 06 2019 9:11 AM

Yes. Call it NED. Don't call it "cure."

When I was diagnosed with inflammatory breast cancer, I had done my homework. I knew the 5-year survival rates. Yet my oncologist told me---twice---that he thought he could "cure" me. I had thought oncologists didn't use that word, and I was very surprised to hear him say it. Combined with several other things that happened in the course of my treatment, I will say that his use of the word had the opposite effect of what I'm sure he was hoping for. While he was hoping, I assume, to sound confident and positive, he created the impression that at the very least I should question his judgment, if he really believed what he said, because it differed so much from what I was reading. If he didn't really believe it, then I couldn't trust that he was being honest with me---which was worse.

Instead of saying he thought he could cure me, he might have said, "I think we can bring you to NED status, and I think there is reason to hope that you will stay in that place for quite some time. There are, sadly, no guarantees. But given the nature of the situation you are facing, I think there is good reason to hope for a long and successful NED. Here's the challenges we're facing, here: <<names challenge such as poor 5-year survival rate>>. But the strengths of the situation are: <<names factors leading him to believe in an NED outcome>>."

Erika Hanson Brown, BA

Dec, 07 2019 8:21 AM

I wish that our docs would be more clear about this. Somehow, some way, they say "NED", and we pts. hear "cure". Perhaps it's because our docs don't emphasize the imp0ortance for our lives in GETTING EDUCATED and REMAINING VIGILANT!
Instead, the "general rule" from the physician community appears to be..."Let me take care of everything; you don't need to know anything."  

When we in COLONTOWN hear that a doc has told his/her patient this, we coach the pt. to find more opinions QUICK!!  
Finding a doc who will support me in learning everything I can about my cancer might SAVE MY LIFE.

THIS is why COLONTOWN is referred to - by the very best GI oncologists - as that PATIENT POWERHOUSE.  

And we shall keep on educating!


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